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Britney_
Regular Member


Date Joined Jul 2008
Total Posts : 35
   Posted 8/4/2008 1:00 PM (GMT -6)   
So today I went to my doctors appointment and I basically had to beg for cortenemas.  I have been on Rowasa for almost 5 months!  It is not doing the trick.  Four years ago, I went into remission using asacol and cortenemas (w/ my other doctor).  He has told me that he doesn't think they will work and where I am today is the "best" it is going to get for me.  I just want to cry b/c I Hate this disease!  Pray that the cortenemas will put me into remission!!!!!!!!!  Thanks.
Current Meds:
4 Lialda daily
Rowasa nightly
Align
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 8/4/2008 1:44 PM (GMT -6)   
I think you need a new doc! You should NEVER have to settle for feeling the way you are feeling.

I hope the steroid enemas work for you! (and fast!)
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


quincy
Elite Member


Date Joined May 2003
Total Posts : 30687
   Posted 8/4/2008 1:46 PM (GMT -6)   
Frustrating to be sure. Were ou on the Rowasa nightly for 5 MONTHS?? You definitely should have had some improvement.

I hope the cortenemas improve your symptoms...

What are your symptoms exactly?

Is your UC limited or throughout?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Britney_
Regular Member


Date Joined Jul 2008
Total Posts : 35
   Posted 8/4/2008 2:03 PM (GMT -6)   
Yes, rowasa going on 5 months and when I taper off them to every other night I start to bleed again w/ increased D. When I was diagnosed 4 years ago the disease was all the way up the left side. My doctor at the time put me on asacol and cortenemas nightly. I remember them working great! I then tapered off of them and was fine. That doctor retired so I found a new one. He of course wanted to do another colonoscopy and it showed no disease so he took me off my asacol. A year later, I began to flare. My doctor truely believed that I did not have UC b/c he never saw it. So, I found yet another doctor!! The doctor I have now did another colonscopy and it did show UC only to the sigmoid. He then put me on Lialda and Rowasa. I understand I will never be normal again but I will fight to get as close as I can to being "normal". My symptoms now are 2 to 4 a day loosely formed, sometimes w/ blood. What do you think? Am I being unrealistic... Please tell me!
Current Meds:
4 Lialda daily
Rowasa nightly
Align
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30687
   Posted 8/4/2008 2:14 PM (GMT -6)   
no, you're not being unrealistic....I do,however, think you might be on a bit too much Lialda, sometimes the meds can cause some symptoms.

I say stick with the cortenemas nightly till you're normal and then start tapering.

You might then be able to go to the cortifoam for maintenance.....

How soon after you go to the every second night did you bleed? after a week? two weeks? the next night?....

Hang tough...this is a good option and worth trying.

Keep us posted.
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Britney_
Regular Member


Date Joined Jul 2008
Total Posts : 35
   Posted 8/4/2008 2:39 PM (GMT -6)   
Thanks Quincy. You seem very educated! After one week of skipping nights w/ the Rowasa blood came back. To be honest I don't think the Rowasa is healing it... could that be a conclusion or not? Also, if there is blood that is not remission correct? My doctor told me he was only going to put me on cortenemas for a month and that is it. If it didn't work then back to the rowasa. :( I am thinking hello, the rowasa is only working a little... I am still bleeding from time to time without skipping nights! GRRRRRRRRR!
Current Meds:
4 Lialda daily
Rowasa nightly
Align
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/4/2008 2:44 PM (GMT -6)   
also what about trying sulfasalazine or asacol instead of lialda? If your Doc is not willing to try those, get a new one.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


NJROCK316
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/4/2008 3:13 PM (GMT -6)   
I agree with what some others have said.  I would maybe try and find a different doctor who would be more willing to work with you.  If what you're doing is not working I'm not sure why your current doctor is so opposed to letting you try something that worked in the past.  I would insist and if there's still resistance see someone else. 

seldom_seen
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 8/4/2008 4:15 PM (GMT -6)   

A valid rant, to be sure. I've been through roughly five GIs, and it wasn't until my latest, 8 years in, that I was Rx'd a steroid enema, which I found to be notably effective (unlike Rowasa, for me). I don't understand why it wouldn't be standard protocol to use a non-systemic steroid such as Cortenema before hammering people with prednisone (although no doubt there is some level of systemic absorption with the enema). Good luck in finding a more suitable physician.


Dx'd left-sided UC in 1998
-Lialda 2.4 g qam; Fish oil 5 g qam; Metamucil 1 tsp BID
-omeprazole 20 mg qam; alprazolam 0.5 mg BID (for anxiety, not UC)
-calcium-magnesium-zinc 1000 mg, 500 mg, 200 IU qpm
-vitamin D 1000 IU qam; beta-carotene 25,000 IU qam

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